Diagnosed at age...

61

Started feeling symptoms at age...

61

What were your symptoms?

Constant tingling sensation in hands and feet. Progressive numbness in left foot and right arm. Numbness can be quite frustrating and annoying. Fatigue and some joint pain/swelling.

How have your symptoms affected your daily life?

Symptoms have never affected mobility or strength but are beyond simple distractions.

How did you discover you had hemochromatosis?

Sought medical intervention because of tingling and numbness. Blood work eventually pointed to HH. Genetic testing confirmed it.

Initial iron panel results:

Iron: 36

Ferritin: 628

TIBC: 53

Transferrin Saturation: 68

Treatment plan from doctor?

Weekly phlebotomy until [ferritin decreases to] less than 50 and maintain at less than 50.

Hematologist not that concerned about diet — wants to bleed iron out of me.

I am generally in good health and have good diet and habits and not frequently in to see family physician. Large family and social group — have not really changed alcohol intake but was never a problem drinker. I quite like red meat and having drinks with family and friends. Stopped eating shellfish and raw seafood. Not the end of the world but a bit disappointing.

How did your family, friends, and peers react when you told them you have iron overload?

Been very selective about who I tell beyond kids and siblings and very close friends. 3 sisters — all ended up having genetic testing and all have HH same mutation. But no active symptoms.

My wife also tested but not carrier so are kids are no more than potential carriers through me. Told no one at work.

Did you continue to experience any symptoms after your diagnosis? How do you feel today?

I am still working through this. I have had about dozen phlebotomies — dropped ferritin to 173 so still have some distance to go. Biggest concern is that phlebotomies have had no impact on tingling and numbness symptoms which may in fact be increasing. Hematologist did not expect tingling/numbness connection to HH. I have been investigated for other causes — neurological (brain and neck MRI) and nerve conduction studies — all generally normal given age. So still trying to figure out symptoms that caused me to go to fam physician in first place.

Do you have any tips or advice for others struggling with hemochromatosis?

Found family physician to be largely dismissive. Important to see hematologist.

Anything else you want to say?

Interested to hear if anyone else has encountered the tingling/numbness symptoms and whether they have found any answers/explanations

Location:

Eastern Canada